sarah o'brien
@SarahMarieOB
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inclusive involvement PhD @KingsNursing & @lissdtp - So, I'm Autistic out now! @JKPAutism - she/her - ♿️ - generally funny, views + typos own
Hertfordshire
Joined May 2009
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Pinned Tweet
🚨 So, I’m Autistic (Sarah’s audiobook version) is now available for preorder 🚨
After so many people asked for an audiobook version I’m so happy to announce it’s in the works!
As an audiobook listener myself this is a dream come true!
🔗
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Are you ‘do it now or never’ neurodivergent or are you ‘I’ll do it later (but forgets to do it)’ neurodivergent?
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I’m really not sure about a young autistic climate change activist potentially being treated the same as senior members of global government.
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You know the neurodivergent feeling where you’ve got an appointment in the afternoon or something to do that isn’t first thing in the morning?
That’s where I’m at today. The paralysis of being unable to do much else because I’m preparing for the big thing.
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If you’re ever unsure how much disabled bodies are interrogated in universities, I once had an invigilator tel me to stop my rest break because she saw no reason for me to be resting.
I then had to roll up my sleeve to show my swollen wrist and advocate for the full break.
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That mumsnet post suggesting that disabled children be excluded from schools because they/we're 'not worth the economic investment' speaks to the fact that we're not as far from viewing institutions as the 'rightful place' for disabled people as I'd hope.
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@fodderfigure
It’s so ‘not like other girls’ which feels like pushback against potentially delayed diagnosis, bullying and that whole experience. But it doesn’t have to be? It doesn’t have to be a binary between ‘normie’ and ‘dopamine dressing brights’.
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I’d love to know the logic behind “you’re not allowed to self diagnose as X” when most people will figure out what their experiences connect to before reaching out to a healthcare professional.
You can’t start a conversation without ascribing some meaning to your experiences.
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We’re not at a point of being able to reclaim or use the r word. It still severely harms members of the disabled community, particularly those with a learning disability.
The fact disabled people withdrew from the project should say something about how wrong it is.
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A small reminder, even for virtual times, if you are planning an event it needs to have breaks, those break need to happen when scheduled and asking 'should we just work through' is inaccessible!
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So, I'm Autistic: An Introduction to Autism for Young Adults and Late Teens is being published on 21st June 2023!
Look at that gorgeous cover!
✨ Now available for pre-order ✨
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Whether needs are visible or not, there is an overemphasis on proving need either through documentation, literal performance of disability or by removing agency from disabled students.
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When thinking about neurodiversity can we look past framing neurodivergent people through the lens of employment and employability?
The spotlighted focus on employment focuses on a pathway that not everyone can put themselves through, productivity does not equal worth.
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As often happens, bureaucracy had gotten in the way, I had communicated the wrist issues via doctors note to my department and the disability service but it hadn’t made its way to central exams.
Admin failures made staff view me as someone trying to cheat the system 🙃
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I’ve never forgotten how humiliating that conversation felt, and how it mirrors academia more widely.
Disabled bodies are not for public voyeurism and judgement but we are made to feel that way.
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With less than two months to world autism awareness/acceptance day/week/month this is a sincere call out for campaigns, celebrations, talks, writing and basically anything about autistic people to be led by autistic people.
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To anyone that knows me, I will be one of those annoying people today because it’s not very often that a book birthday comes along!
So, I’m Autistic is real, it’s here and today is this little book’s birthday!
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It's the first day of
#AutismAwarenessWeek
, lets start with some truths (myth busting):
1. Anyone can be autistic which means that some autistic people can face additional marginalisation through other parts of their identity. Not everyone fits the stereotype of 'white boy'.
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Charity shop finds are so strange, like what do you mean there’s entire books that people wrote about being highly sensitive and they don’t stumble across neurodiversity even once in their research.
Like, ma’am, that reads like autism to me.
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If you're wondering what being undiagnosed ND is like in the UK right now, Psychiatry UK, the largest provider of Right to Choose assessments and treatments (ADHD meds) has paused accepting referrals.
They don't have the capacity to conduct assessments or offer ADHD meds.
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Nothing quite reminds me how vulnerable academia wants to make disabled people feel quite like having to hand over our most intimate medical details to prove our support needs.
Strangers don't need to know that level of detail to provide basic reasonable adjustments.
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A reminder that disabled people can still be ableist.
Whether internalised ableism or casual ableism, the words and actions of disabled people can still harm other disabled people whether intentioned or not.
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I am pretty sure that ‘not sitting properly’ is a super autism thing.
Legs crossed, sitting on feet, legs up, sitting on legs, hugging legs- basically anything to avoid two feet on the ground.
I actually feel almost physically uncomfortable with both feet on the ground.
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If I could sum up my experience as an autistic person it would be: I can hold a conversation with a parliamentarian but struggle to have a basic conversation with a shop keeper. It’s not logical but neither is my ability to communicate.
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Do you ever just sit with how you’ve been quietly discriminated against?
The ways that people shuffle away from you, the conversations avoided, the job interviews failed for reasons thinly veiled about your disability, the twee looks and patronising tones.
Just me?
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It is so funny in a sad way, not funny in a haha way that those that’ll bully us can figure out we’re autistic immediately and yet it can take clinicians months or even years to come to the same conclusion.
Like how did four year olds figure out what took forty year olds years?
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@tee_spoonie
I need less abled people turning to my romantic partner as if they are my carer and more abled people realising that disabled people can and do have enjoyable romantic and sexual lives if they want them.
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Also realistically, disabled people are more likely to ask for less than they need support-wise to get by because we are consistently framed as a burden through our requests.
The requests might be additional but they’re a step towards equity.
We’re not burdens or cheats.
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Hey
@Pret
, your
@LondonWaterloo
store has a platform lift to enable disabled customers up to the first floor. However, the sign says it is out of use.
Staff use it to transport ingredients while disabled people cannot enter. It doesn't look out of service. What's up with that?
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The reporting that almost feels expected but is still gutting every time it emerges.
When violence occurs, especially VAWG, I always hold a bit of fear as an autistic person that there will be a moment that an autism diagnosis is used as context in explaining the why.
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@RachelCDailey
Don’t you dare come for me and my emotional support parentheses!
I need them (I probably don’t but how else can I add the tangential asides?)!
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I thought Canada looked like a nice place to live, but I’d only be able to holiday rather than emigrate there… because I’m autistic.
Imani makes key points around how information can be weaponised in the health and care for disabled people.
There’s a reason why I am very careful talking about the link between being autistic and trans.
I hope the dress helps.
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Disabled people deserve access to education, it's a fundamental right for everyone and shouldn't be removed from anyone.
It's that simple.
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Quick thread/ review of
@TheMERL
's first autism/ quiet hour:
- Really well thought out in terms of interactive noises being dimmed or turned off
- Good time of day to host as we got in and out before all traffic, practrically had the MERL to ourselves
- Staff were very reassuring
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Anyway, the moral of the story is, systems for supporting disabled students aren’t always the best or smoothest ways of working and you shouldn’t pressure someone to advocate for themselves (particularly not under exam conditions 🙃).
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Aside from the fact that disabled people aren't 'mucking about' if they are out of work, how many jobs actually fully support the access needs, skills, knowledge and ultimately fluctuations in need of disabled people?
Less than you'd think or hope for actually.
“I think people on disability benefits and sick pay are an enormous untapped resource”
Journalist Isabel Oakeshott says reform to the disability benefits criteria, announced in the autumn statement, is not “unreasonable”
#bbcqt
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One of the hardest parts as an autistic person with everything about COVID19 is the upheaval and change in routine.
The change and uncertainty is peaking at the moment. It’s leading to a lot of catastrophising and anxiety.
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1. He's not the first disabled islander, Niall Aslam is (autistic, Love Island 2018)
2. Disabled people aren't inherently inspirational for doing things non-disabled people do 🙄
3. It's very clear when disability is written about by non-disabled people
BREAKING Inspirational teacher Hugo Hammond becomes first disabled
#LoveIsland
star as he joins line-up
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My least favourite kind of admin is disability admin.
It might be asking for a reasonable adjustment but it's not a reasonable amount of admin to get it and maintain it.
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It's 10 years since my autism diagnosis, to celebrate I'm giving away five copies of So, I'm Autistic!
How to win?
1. Follow
@SarahMarieOB
2. Like this post
3. Reply to the post (I'll draw names from the replies)
Open until 16th April - my autiversary
UK residents only
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When you realise that needs aren’t special or additional and are in fact just access needs, which everyone has, you break down some of the stigma that society builds up.
Some people have more access needs than others and generally good access is just good practice.
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One of the least contentious things that should be understood about deafness is that hearing is not binary.
I see so many fab Deaf/ HoH people having to explain over and over that there is such a wide spectrum of hearing ability that isn’t just can or can’t hear.
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@slooterman
Shockingly disrespectful, cemeteries are a place of respect not a place to recruit for religion
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I'm not vulnerable because I'm a disabled woman, I'm vulnerable made by having to share the deepest parts of how my disability impacts me to get any support.
I shouldn’t have to become ‘vulnerable’ to be able to access society.
#NotVulnerableIWD
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If diagnostic services for autism and ADHD were to be redesigned, using co-production to work with autistic people and ADHDers to make it more accessible and inclusive, what would be your must haves? The things you’d change? The tweaks or revolutions?
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So, er, without going into too much detail, I actually tried to unalive towards the end of March.
Brains aren’t always the most gentle of things, they’re quite tricky to manage I’ve found.
If I had, I wouldn’t have got to experience the joys of April, pals and cake included.
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Not someone telling me I should think about the harms of self diagnosis around ND yesterday and literally NHS data today being in the news for some waiting lists legit being 8 years long.
Self ID is valid and essential under these conditions.
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The government's new "ask, don't assume" campaign may seem good in theory, but realistically builds upon a culture of distrust the government have fostered.
Disabled people want to go about our daily lives, not become continuous learning moments or curiosity fodder.
Today Government has launched a new disability awareness campaign.
The Ask, Don't Assume campaign is an attempt to divert attention from the real issues & barriers faced by disabled people.
It also ignores the Government's role in creating negative attitudes about disability 1/
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I get really excited seeing autism charities putting on events but then instantly disheartened when they are completely focused on parents and children.
I’m autistic for life not just for school years.
I’m just not seeing the support necessary for all the late diagnosed adults.
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There is nothing quite as uncomfortable as a meltdown sitting heavy in your chest and throat but having to hold it back until getting to a safe space to actually feel it.
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Just got an email back about my book proposal.
The proposal for a book written by autistic people for post-diagnosis information and support.
They're really interested.
I am in a state of shock.
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The more I autistically write about autism (writing about autism for an autistic audience rather than an NT one) the 'more autistic' I become irl.
What I hadn't realised in the act of unmasking is just how many layers there are to it and continuous the journey really is.
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@tee_spoonie
The caveat being that some people might not want a romantic or sexual relationship but that doesn't mean that disabled people should be de-sexualised completely just because society says disability is 'bad'.
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I’ve voted and Monty is upset he didn’t get to go in and cast a paw print
#DogsAtPollingStations
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What is an access red flag for you?
🚩Mine is an access consultant that says they have knowledge of every disability and access need so don;t need to bring in other expertise 🚩
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All those words and thoughts over the years have been squeezed into a book that’s now real and in my hands thanks to
@JKPBooks
@PookyH
’s and
@charliclement_
’s reviews bring so much joy.
So, I’m Autistic - available for preorder:
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I, a terrible dog owner, forgot to tell the groomers that Monty’s food manners mean he doesn’t take food or treats unless told he can do so with a release word.
This meant Monty was a good boy at the groomers who looked at his favourite treats but didn’t take them.
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The funny thing about workplace adjustments as an autistic person is often how much they diffuse benefits to my colleagues.
I've had overhead lighting removed to stop glare on desks, agendas in advance (for me and everyone), clarity to communication and just plain empathy.
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📢 Please make your events for autistic adults as well as autistic children 📢
Museum events for autistics over the age of 16
Gallery openings for adults
Quiet versions for adults and teenagers
Information for events pitched at age appropriate levels and freely available
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It’s interesting seeing how different news outlets report on autism and ADHD through their print and visual media. You can *instantly* tell those that work with us to get the language right and those that don’t.
ITV News last night reported an “increase in neurodiverse people”.
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A ✨ quintessential ✨ disabled experience early on in S4 of
#SexEducation
: the breakdown of accessibility
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The most frustrating thing* about being an autistic adult is that there really are just no services for me post-diagnosis.
I'm not a child or a parent so there is nothing for me to access.
This has happened in every area I've lived in.
* there are probably others
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The funny thing about accessibility is that there is no one accessible or ‘fully accessible’ format.
Whether it’s easy read, plain English, alt text, audio, large font, colour schemes, BSL or contrast there is are so many (in)accessible ways to convey information.
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It's
#PurpleTuesday
which means you get to perceive me, a disabled person, as a disabled consumer for one day only.
No, dimming the lights and music for one hour a week does not make shopping accessible for me.
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Periodic reminder that while lockdown is easing that easing is not universal for everyone.
For residents of care homes, many of which are working age disabled adults, if they leave their care home to socialise they have to self isolate for 14 days once their ‘trip out’ is over.
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3. There isn't a 'female autism' and a 'male autism', rather social conditioning and gendered expectations that place on every person in society. It's more accurate to think of autistic behaviours you see (externalised) and autistic behaviours you don't see (internalised).
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Absolutely bursting with excitement to share that from October I will be starting an ESRC funded PhD at Kings with
@gbrgsy
,
@OliWilliamsPhD
and
@Solnetwork1
focusing on inclusive involvement with disabled people.
I've written about it here:
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If your National Inclusion Week posts don't have alt text on images or captions on videos then they aren't actually that inclusive are they?
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What in the shitty alt text is this??
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Thoughts on making university lectures accessible for autistic students: a quick thread
Most of these things unsurprisingly make things better for more than just autistic students
#AcademicTwitter
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2. Autistic children grow up, we don't just need support in childhood but throughout our whole lives, good support in education can contribute to a better life in adulthood (we determine our quality of life).
We often don't get the chance at an accessible education.
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So we're all just chaotic middle both? 🥴
At least there's solidarity in that.
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It’s
#WorldAutismDay
which means everyone gets to perceive, be aware of, accept and include us, hopefully not just today but everyday.
There are some super simple ways to do just that ⤵️
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@BlondeHistorian
@GuideDogAva
Little one grabbing onto her harness!! 😍
Ava gets to do her job without being distracted, which she loves, and then she gets all the love and attention from little people, which she also loves.
A win-win situation which also teaches the little kids about GDs.
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I’m excited to announce that I’m writing a book for
@JKPAutism
🎉📚
After getting diagnosed and having to figure out everything without support as a teen I’m writing the book for every young person that gets their diagnostic report and is left asking “So I’m autistic…”
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Why, when it comes to autism and 'transitions' is transition only seen in an education or 'preparation for adulthood' sense?
It's not as clearly binary as that, there are so many big and small transitions missed out in that view.
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5. Autism is not a mental health condition nor does being autistic mean that we should have a mental health condition. Autism is a neurodevelopmental condition which means a brain difference present before birth that impacts development and is life long.
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@micha_frazer
I think that just speaks to how good of an interviewer you are and how at ease you made Gemma feel.
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4. Autistic people are autistic before they are diagnosed/ identified. Some receive a diagnosis in childhood, adolescence adulthood or after retiring, this means that many spend their autistic life with differing levels of support.
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6. Autism is not caused by vaccines, can't be cured and changing diet or environment doesn't make someone less autistic.
It is more likely that environment changes make a space more accessible, a person is not less autistic just more comfortable.
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A tokenistic gesture while disabled people struggle to hear their homes, charge electric mobility aids, run medical equipment at home and have to question what they can afford to cut before it’s one cut too many.
Parliament is lit up this evening to mark
#IDPD2022
and
#PurpleLightUp
, celebrating the contribution of disabled people worldwide.
Photo: UK Parliament / photography by Roger Harris.
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So, I'm Autistic is landing on shelves, bookshops and warehouses on 21st June!
I'm so excited for you all to read and enjoy it!
It's the culmination of years of self-discovery and finding a path after an autism diagnosis.
Pre-order here 👉
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✨ I completed data collection for my PhD this week ✨
🥹 now the focus shifts entirely onto analysis and writing
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Reversing decades-long trends of missing, underdiagnosing and otherwise not highlighting the support needs of autistic people does not mean it is now over-diagnosed.
It's a course correction and recognition that we aren't rare.
🧠 Though many welcome signs of improving awareness of autism, some experts believe we may now be overdiagnosing it
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I got to do something pretty cool this afternoon!
My mum got to ring the bell that signifies she’s officially cancer free and thank all of the nurses who poked, prodded and helped her through treatment.
🔔🔔🔔
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7. Someone can't be more or less autistic, they simply have strengths and challenges in different areas and these traits aren't stagnant, they depend on the support and situation they're in. It isn't about functioning but is about support needs.
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@CaraLisette
It’s heartbreaking that this ultimately human and compassionate approach feels quite novel, it shouldn’t, empathy and meeting people where they are should be practice as usual but healthcare as it currently exists doesn’t allow clinicians the grace or time to allow patients grace
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To all the wonderful gender non-conforming peeps out there getting round up in IWD posts, I hope you have a wonderful Friday and are perceived as your true self rather than being seen as woman adjacent.
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One of the great things about accessibility is that it benefits so much more broadly than the directly intended users.
There are so many access features that I make use of that aren’t marketed me that make my life easier.
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No offence but working in an environment/ organisation that is inaccessible and where you consistently face micro-aggressions as a disabled or neurodivergent person, sits with you, even long after you leave.
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10. There is a general preference for identity first language "autistic" over person first language like "person with autism" or "people on the spectrum".
Autism isn't something we can take off and put on when we want, it is an intrinsic part of every thought and action.
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9. There isn't an autistic look, stereotypes make us think there is one but there isn't. You can't judge that someone is autistic just by looking at them and it isn't a compliment to say "you don't look autistic" or "you aren't like those other autistic people".
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If you see autism promoted using how great autistic employees are for the workplace, just remember the words of James Baldwin:
"Darling, I have no dream job, I do not dream of labour"
Our 'worth' should not be defined by work or what we 'produce' for society.
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I've just seen a professional discussion in which 'high functioning autism' was suggested as an alternative to 'Aspergers'.
There is never a need to go down the route of functioning. Ever.
Amazingly, autism or autistic will suffice, with no modifiers necessary.
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If the media really wants to know what lockdown has been like for autistic people (who aren’t the son of Dominic Cummings) do ask an autistic like me who works with autistic people, has supported them and analysed how the policy world is impacting us.
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Loop earplugs may have built their brand off of neurodivergent people, dumped us and pivoted entirely to the music industry BUT they are still the most comfy, lowkey way to manage the auditory environment that isn’t huge NC headphones.
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The long history of autism being defined by how we impact other people rather than how we, as autistic people, experience the world is long lasting
"Reversing autism" should reasonably be expected to mean improving sensory sensitivities, improving access to social connection, improving interception and control of hyper focusing. It's weird for researchers to use it to mean reducing its impact on other people.
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8. People are often more than just autistic, many have at least one co-occurring condition and some have more than two. This is in physical and mental health. Common conditions include epilepsy, ADHD, anxiety and learning disability. Everyone is individual.
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@Pret
DM’ed but this isn’t something that should be private tbh, it’s apparently a long standing issue that is excluding potential customers who are wheelchair users.
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